What Is Autism?

Adam Lanza, the 20-year old shooter who took the lives of 20 children and 6 adults at Sandy Hook Elementary in Connecticut after murdering his mother and subsequently taking his own life, has brought autism to the forefront.  Not mental illness.  Autism.  Why? Because the media is announcing far and wide that he apparently had Asperger’s Syndrome.  Adam Lanza was an Aspie.  Now, I know that correlation does not imply causation, but, in the wake of such a national tragedy, people want a reason.  They need a reason.  For God’s sake, why?!

My little voice on my little blog may not make one iota of difference, but I want to take a moment to very simply explain autism.  What is autism? Frankly, no one knows.  That’s right.  No one knows what causes autism although we are learning more.  Why do I even bother to blog about this? Because autism spectrum disorders are essentially what I do for a living.  I am a co-owner of a corporation that is part autism “think tank” that collaborates with hospitals in North America and universities, and the other part produces materials for teachers, professionals, parents, and children on the autism spectrum.  Also, I have an autistic daughter, and my business partner (and dear friend) is also on the autism spectrum as is her daughter.  This is a subject that I do know a bit about although, it seems, never enough, and it’s personal to me.

So, what’s the deal? Why do we not really know what autism is? Because we don’t know what causes the symptoms.  What do we know? It’s a neurobiological disorder, but we can’t run any medical tests to detect it.  Let me explain to you how autism is diagnosed.  Firstly, autism is officially called an “autism spectrum disorder” because the symptoms range from ‘high functioning” to “mid functioning” to “low functioning”.  This functional part of autism lies with behaviors, communication, and activities of daily living (ADLs).  How functional a child is determines where they fall on the autism spectrum.  Autism spectrum disorders affect three parts of a person’s life:

  • social interaction
  • communication both verbal and nonverbal
  • behaviors

There are three main types of ASDs although the DSM-5 will be changing the labeling:

  • Autistic Disorder
  • Asperger’s Syndrome
  • Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)

The diagnostic procedure involves observation by clinicians, parental reports, severity of behaviors, neuropsychological reports, age of onset, interference of behaviors, interactions, and communication issues with ADLs, and other criteria.

My daughter Milly was diagnosed with Asperger’s Syndrome at the age of 4 by the Early Intervention department of our school district.  Strangely enough, our school district has a stellar EI department.  To be honest, she was  a nightmarish baby.  Milly was my fourth (and last) baby.  She was born screaming, and she didn’t stop screaming for two years.  I’m not embellishing.  I took her to the pediatrician numerous times in an effort to find a solution.  Did she have acid reflux? She did.  Was she in pain? Was my breast milk tainted by something? I changed my diet.  She was miserable all the time.  The only time she wasn’t screaming was when she was attached to my boob which, as it turns out, was quite often.  She didn’t sleep either.  So, she ended up in bed with me attached to my breasts–all night long.  Wiggling.  Crawling.  All over me.  For four years.  She refused to wean.

By the time she could sit up on her own, she began building walls around herself out of the Lego Duplo blocks.  If one of her sisters tried to play with her, she would scream louder.  Why? Someone touched the Duplo wall.  A 7-month old infant building Lego walls around herself in a recognizable pattern.  The tales I could tell of her obsessions, her behaviors.  And the kicker? She could speak at 18 months.  Full sentences.  The next time you meet an 18 month-old baby, imagine them having a conversation with you: “I quite liked my tea.  It was delightful.”  Direct quote.  I knew something was wrong.  If she wasn’t screaming, she was nursing.  If she wasn’t nursing, she was speaking to me like a tiny professor.  When she was 3-years old, she wanted me to read her novels.  I was reading Charles Dickens to her, and she would sit for hours completely engrossed.  Then, she’d have some massive meltdown.

When I finally found a developmental pediatrician, he diagnosed her as having three separate anxiety disorders, Sensory Processing Disorder (SPD) or Sensory Integration Disorder,  and called her “artistic”.  He completely misdiagnosed her.  Why? Because she was a girl.  Had she been a boy, she would have received a correct diagnosis.  There is still a bias in the medical community around girls having ASDs because historically more boys have ASDs than girls.  She has since been diagnosed medically as autistic as well.  This leads me to a crucial point.

When you meet an autistic person, s/he will most likely have co-morbid conditions.  Milly has SPD as well as profound anxiety.  In fact, many, many ASD people have SPD.  There is some talk in the therapeutic and medical community about SPD possibly being a form of autism.  It’s almost always present in one form or another where an ASD is diagnosed as is some form of anxiety.  What else will you find? Oftentimes, you might find depression.  There are also cases of bipolar disorder, too.  All this is to say that an ASD is rarely diagnosed alone.  There are usually always co-morbidities.  Did you know that autism and schizophrenia tend to run in families? What’s more, the same gene that causes bipolar disorder causes schizophrenia.  Years ago, autism used to be considered a psychotic disorder.  Of course, it’s no longer considered to be a mental illness.

What I’m pointing out is that the media is not doing its job when it sensationalizes Adam Lanza’s possible autism diagnosis because if he had autism, then he probably had a co-morbid mental illness, too, which would have most likely been the cause of his psychotic break–not autism.  Autism does not cause psychosis.  It’s not a psychotic disorder.  For a person to go on a killing spree as well as commit matricide and suicide, there would most certainly be psychosis. Apparently, that psychosis was untreated as well as that underlying condition.  Where autism possibly comes into play in this scenario is around verbal communication.  ASD people often struggle with verbal communication.  If Adam Lanza was struggling with a psychotic disorder, then he may very well have struggled with talking about it.  Because ASD behaviors can look odd, it might have been difficult to judge his slip into psychosis from his normal, everyday behaviors.  ASD people are often withdrawn and obsessive anyway.  They can be suspicious and paranoid by nature.  Self-regulation is so often a problem for ASD people so his mother may not have been able to decode his daily behaviors.  His psychotic behaviors, to her, may not have looked that different from his autistic behaviors particularly if he was wont to isolate himself and didn’t talk very much.  What would she have had to go on?

Lastly, mood and psychotic disorders often emerge in late adolescence and the early twenties.  He may have been in prodromal schizophrenia and had his first psychotic episode.  Honestly, we’ll never know, but it’s a good possibility.  The majority of schizophrenics are not violent, but Adam Lanza was raised in a home with access to weapons.  His mother also taught him how to use them because it was her hobby.  I’m not making a political statement here.  I’m commenting on the culture of his home.  It’s hard to know what a psychotic mind will do when it breaks.  Grace has never been violent a day in her life.  She is one of the gentlest souls I know, but she stabbed herself when she was psychotic.

Had I not been a mother who was constantly home, always around my children, hypervigilant because of my background, would I have recognized Grace’s change in behavior so readily? I have been told that we were lucky to have Grace correctly diagnosed so early.  I started documenting her symptoms very early because I just had a hunch.  Not all parents are like me always on alert.  It would be nice to be a more relaxed parent.  What if I were a working mother, out of the house, rather than self-employed able to be home? What if Grace were 20-years old? How would anyone know if she were slipping into mental illness if she were already “odd” and withdrawn?

I think it’s very important that we know the truth about autism, how it’s diagnosed, and what it looks like because the media is not going to do its job in properly explaining the nuances.  The media’s goal is to make sure that you watch your television.  Period.  The last thing that we need is more stigma around mental illness with autism being dragged right behind it.

I want to know what went wrong in the Lanza family that caused a 20 year-old young man to commit such a heinous act, but I also want the information and discussion around this tragic event to contribute to the greater good so that those 28 lives weren’t lost in vain and fear of those who are different or mentally ill doesn’t hold sway over a grieving nation causing alienation and vilification of innocent people.


Yes, I Do Want Some Cheese With My Whine

Michigan whine and cheese

The IEP process feels like Chinese water torture sometimes.  Call a meeting to discuss if your child has an educational disability…DRIP.  Allow people whom you don’t know to evaluate your child in what feels all too personal…DRIP.  The excavation of medical and school records…DRIP.  The observation of your child…DRIP.  The family interview…DRIP.  It feels interminable.

Yesterday, I went to the hospital for the IEP team meeting where the IEP team met to discuss Grace’s proposed IEP.  This is all a part of this process.  The last meeting we had was for the purpose of telling our resident district that Grace qualified for an IEP and what our expectations for her treatment and education would be which are, at this time, one and the same.  This meeting is a bit like a review of the evaluation findings, but I already knew what the findings were because I provided all the records upon which the IEP was founded.  The only things I didn’t provide were the in-hospital observations.  Grace came into the hospital with a complete neuropsychological evaluation report from another center which was completed in May 2012.  For your information, a school cannot do an IQ test on a student in the same year that a previous IQ test has been done.  So, since Grace had already endured a fairly thorough neuropsychological work-up, according to IDEA, she could not be put through those tests again.  This IEP evaluation was largely a records review combined with some observations and a family interview.

Why do I want to whine? Grace has her IEP.  It’s what I have been after since last August.

I’ll tell you.  I’ve lost my objectivity when it comes to our resident school district.  I will be the first to admit that.  I tend towards being a trusting person.  I went into Grace’s school in late August of this year when she was still in the in-patient stabilization unit and explained to them what was coming their way.  I explained how ill she was.  I gave them copies of all the records that I turned over to the intermediate district that just finished evaluating her for her IEP.  Her resident district thumbed through those records and said, “Nope.  She doesn’t qualify for an IEP.  Her test scores last year were fine.  She has a 504 plan already.  We’ll just give her some breaks.  Send her to the break room, let her play with her fidgets.”  On September 14, she stabbed herself, and we were at the behavioral health emergency room for hours.  On September 19, I was sending out emails, begging them to do an evaluation; she had come home and told me that she had been hiding in the school bathroom because the Three Men had been chasing her.  She didn’t know what was real anymore.  No one would listen to me.  No one would help her.  I called the Ombudsman’s Office for the oversight of mental health and disabilities and spoke with them.  Finally, on October 11, we had our IEP evaluation meeting which is only a meeting to discuss whether there will be an evaluation.  The SPED evaluator didn’t listen.  She had already prepared the order of evaluation before the meeting took place.  Grace would be subject to functional behavioral analysis (FBA), and, in their opinion, she would never qualify for an Other Health Disability-IEP (OHD-IEP) because the law says that sort of IEP is reserved only for kids with ADHD.  WRONG! A fight began, and it was nasty.  As soon as the regional Ombudsman phoned them to come back to the table for a real IEP evaluation, they cut me off.  They also refused to speak to the Ombudsman but instead sent the district’s attorney who gave the Ombudsman the runaround by claiming that he had never heard of the Ombudsman’s office.  He made her read him the statute that explained that office’s authority in the matter of IEPs.  Valid information was withheld from me, and the superintendent of my district even ambushed me in an early morning phone call.  The very woman that has been representing our district in these IEP meetings at the hospital is the same woman that phoned my home and badgered one of my daughters.  To say that I am weary, angry, and emotional when it comes to this district is…understating it.  I see their faces, and I want to cry.

Again, why do I want to whine (please pardon my verbosity)? Because I have to do an intake and tour with Grace next week at her new school, and that woman from our district who’s been coming to the IEP meetings wants to come along.  Yep.  Something that is supposed to be a good experience for Grace will be stressful and tense because SHE will be there.  Why? I have no idea.  Does she have to be there? Hell if I know.  I wouldn’t think so.  I don’t want her there.  I don’t want her there at all.  I don’t like her.  I don’t like any of them, but, as I said, I’m not objective anymore.  I’m upset.  I’m very, very, very upset.

I am going to make an appointment for the tour and intake.  I’m not going to tell anyone from the district about it.  I wasn’t told that I had to do so.  If she shows up, then she shows up.  My husband said that perhaps she wants to see the school and be a part of the process because she hasn’t participated in anything like that before.  Perhaps they are trying to educate themselves since Grace’s situation is indeed rare.  He might be right, but it feels a little late for that.  Alas, I need to try to get over this.  I live here.  I need to try to behave in a conciliatory manner.  I need to model appropriate behavior, and I have been.  I am very polite in these meetings.  It just feels so raw.  They still have no idea what they’ve done nor what they deprived Grace of.  She lost an entire semester of education because of their tomfoolery (I feel like my grandmother using the word ‘tomfoolery’).

Deep breath…I know that I will do what is necessary, but one grows tired of that.  Always doing what’s necessary rather than doing what one wants.  I want to take that tour with Grace.  I want to build her up and point out all the fantastic possibilities.  I know that I will feel like this woman is there to observe Grace as a spy (I know how paranoid that sounds.  As I said, I’ve lost my objectivity).  She will be watching her, seeing if she really needs to be there.  Is she really that sick? After all, our district is hiring this intermediate district to educate Grace, and I suspect they don’t really want to do that.  And that, I fear, is the real reason this woman wants to come on this tour and intake with us–to judge, assess, and observe.  Not to be educated.  I am willing to be wrong.  I am so hoping that I am wrong, but I don’t trust them.

Why should I?

Now…about that cheese…


Business As Usual

I must say, if my school district were a mythical creature, then I think it would be the Hydra.  Cut off one head and two more sprout up in its place.  I don’t, however, think I’m Hercules as much as I would enjoy the benefits of demigod status.  I feel a bit more like the Village Idiot with a wooden sword that asked, “How bad can it be?” while marching off to beat up some unknown enemy only to find out that the bully who’s been kidnapping all my neighbors and friends is really a carnivorous, fire-breathing dragon.  Didn’t I do a good job mixing my metaphors?

My district is up to no good again, and I’ve run out of steam to fight.  My wooden sword has been turned to ash.  I’ve got some third degree burns, and I’m exhausted.  Grace starts her new school on January 2, 2013.  This is good news to be sure.  I’ve come to find out that the school district was cooperative because an investigator from the Department of Education dropped in on them.  It seems that DOE investigators have a bit of influence.  Grace’s advocate, who happened to be a regional ombudsman from the Ombudsman’s Office for Disability and Mental Health, filed a complaint with the state’s Department of Education.  Oh, the drama…I feel like I’m trapped in a soap opera.  So, the cooperation I witnessed last Monday was not because they found their brains.  It was because they had the the DOE breathing down their necks.

So, what’s my problem? I have another child with an IEP in this district.  What sort of IEP does she have? She has an autism spectrum disorder so she has an Autism IEP because ASDs get their own IEP.  They are not viewed as emotional, behavioral, or other health impaired.  She’s had this IEP since she was 4 years-old.  She is now 9.

Here’s the thing about an IEP.  It’s only as valuable as its implementation.  If an IEP isn’t followed, then it’s useless.  My daughter’s IEP is not being followed.  I have asked her teacher and social worker to follow it.  They won’t.  Last year, her teacher didn’t like her and even rolled her eyes in an IEP meeting.  This teacher even hit another child in the classroom, and my daughter witnessed it and reported it.  This year, my daughter’s teacher spent the first ten minutes of our parent-teacher conference complaining about my daughter and her lack of social understanding.  I sat and listened to her complaints and then explained ‘theory of mind’ (ToM) to her.  I explained the difference between neurotypical children and non-neurotypical children.  I explained that my daughter has an ASD, and all of her complaints were centered around my daughter’s autism.  She asked me what ‘neurotypical’ meant citing that she had never heard that word before.  She had never heard of ‘theory of mind’ before either.  How is this teacher supposed to teach an autistic child if she doesn’t even understand the hallmark feature of her disorder? She has two other ASD kids in her classroom.

What does this tell me about our district? They have not educated their staff on ASDs which is unfortunate because 1 in 86 kids have and ASD, and that number is rising.  What’s more, this district uses the Responsive Classroom approach in their classrooms.    My daughter is not responding well to that approach, and if the teachers don’t understand ToM difficulties in ASD kids, then these kids will flounder.

My daughter comes home everyday crying.  This has been the case since first grade.  She is now almost at the end of the first semester of third grade.  She hates school, and she almost hates herself.  She thinks that she’s stupid.  I have spent inordinate amounts of time talking her off ledges–every single day.  If her day at school is going particularly badly, she self-harms at school.  She might dig her nails into her arms until she bleeds.  She might pinch her little legs so hard that she’ll have deep bruises.  This is not unusual for ASD kids.  They do this for a few reasons: 1) there is an endorphin rush caused by the pain which eases their anxiety 2) they feel helpless and need to channel it 3) they are very angry.  My daughter does it for all three of the aforementioned reasons.  She rarely does this at home.

I told her social worker and teacher about her tendency to self-harm, and I warned them that if they catch her doing this then they must intervene and help her.  Self-harming is a sign that something is profoundly wrong in her world.  Yesterday, my daughter came home and told me about her day.

I didn’t have a good day.  Our class had to go to the library with another class, and it was loud.  Kids were pushing.  I don’t like doing that, and I took a deep breath to cope with it.  I guess my teacher heard me because she looked at me and said I could handle it.  I don’t know if I did something wrong.  I started to feel upset.  So, when we got back to our room I wanted to hug myself with my knees up, but I’m not allowed.  We have to sit in third grade position.  My teacher said I could sit in the rocking chair and rock it out, but I don’t like that.  I have to do that in front of everyone.  I told her that I didn’t want to do that.  So, she said in front of everyone that I didn’t have to do that, but I was not to go and hurt myself.  That was not an option.  I felt…I don’t know.  Like crying when she said that.

This teacher was standing at the white board in front of the entire class and told my daughter, who was sitting at her desk, that it was not an option to hurt herself.  All because she chose not to sit in the class rocking chair as a coping mechanism for her anxiety.  I was stunned.  That information is private, and it’s not private now.  There are a few children in her class who are unkind.  What might they do with that information? What has the revelation of that information done to my daughter?

After consulting my daughter’s developmental pediatrician as well as her psychologist and lying awake at night interminably, I have come to a decision.  I will be removing my daughter from this district.  I have tried to collaborate with them for three years where she is concerned, and they refuse to do anything that will ultimately help her.  Not every district works like this, of course, but mine does.  I will be enrolling her in a virtual school, and we will start anew.

My husband will be speaking with the school.  At the very least, they have violated disclosure agreements, and they certainly weren’t following the criteria set forth by the Responsive Classroom.  I have offered to collaborate with them where my daughter is concerned.  No response.  And yet she comes home telling me that she was made to sit in the hallway for crying.

Our school district has not always been this way, but I suspect we have an administration problem.  Trickle-down leadership troubles and all that.  At this point, however, I don’t have the stuffing to call an emergency IEP meeting, confront everyone, and demand accommodations.  Not when I’ve become “that parent” due to Grace’s IEP problems.  Not when this district seems to care so little for the children in their care to begin with.  Not when her teacher isn’t interested in collaboration.  I can’t throw my girl under the school bus to make a point and start a fight that I won’t win.  Not when this district would rather pay an attorney our tax dollars to call up an ombudsman and lie for 30 minutes.  Not when it takes an investigator from the Department of Education calling them up to get them to cooperate.

And this is why districts can carry on, business as usual.  They deny services, watch children fail, and exhaust the parents until the parents either remove their needy children from the district or just fade away from emotional and physical exhaustion.  Well, they can continue doing as they have, but my tax dollars will go with me when I leave as will my support.

Operation Rebuild My Daughter’s Self-Esteem and Get Her on The Right Track begins January 16, 2013.  Wish me luck.

Helpful link: Theory of Mind in Normal Development and Autism–The best article on Theory of Mind difficulties I’ve ever read, written by Simon Baron-Cohen, professor of Developmental Psychopathology at University of Cambridge in the UK.  He is a forerunner in research on theory of mind difficulties in autism spectrum disorders.

The Nitty Gritty

Grace “graduated” from her partial hospitalization program (PHP) last Friday, and she is home once again.  I toured her new school last week, and it is exactly what I hoped it would be.  The staff and teachers are informed, educated, and gentle.  I did observe a para in action and found him to be quite strange but perhaps that’s just his way.  The facilities are brand new and gorgeous.  When I met with the social worker, one of the teachers, and the facilities director to discuss Grace, they seemed to understand everything I said.  When I asked them how they would handle certain situations, their answers were the right ones.  Clearly, they’ve done this before.

This is where the teachers from this district got it right, and I’ll write about it because a present or future reader might need this information.

Firstly, my school district is a member district of something called an intermediate district.  This intermediate district was designed to serve a population of students with special needs.  Those needs are varied.  Students might have autism and require additional services that can’t be met in a mainstream classroom.    Students might have conduct disorders and require additional supervision with even a police liaison present.  Students might have mild to severe forms of mental illness which prevents them from being mainstreamed.  This school has a program for teen girls who are pregnant or who have just had their babies and need to continue their education.  It also has a daycare for infants.  This is all to say that there are myriad programs for special needs students, and the ticket in is the IEP.  There are a few types of IEPs that will get a student into this intermediate district.  The first kind is the Emotional and Behavioral Disability IEP (EBD-IEP).  Qualifying for this IEP is difficult, and the process is elaborate.  One of the requirements that must be met in order to qualify for this IEP is an FBA–Functional Behavioral Analysis.

An FBA can be very useful if you have a child who is more behavioral than emotional because the FBA allows one to ask the question: What is the function of this behavior? In times past, teachers and parents would look at a child who was misbehaving and label behaviors as “bad” or “good”.  The FBA allows us to look at behaviors and ask ‘why’ rather than strictly labeling them.  For example, using my youngest daughter as an example, she will occasionally self-harm in the classroom.  This is, of course, an unwanted behavior, but one must know why she does it before it can be changed.  What is the function of her self-harm? What precedes the self-harm? Is she anxious? Is there a change? Has there been conflict between her and someone else? These are the questions that come up in an FBA, and the goal is to replace the maladaptive behavior with an adaptive behavior that will help the student flourish.

Grace’s school district was very insistent that they evaluate her under the EBD-IEP whereas the intermediate district that evaluated her at the PHP refused to evaluate her under an EBD-IEP and instead evaluated her under the Other Health Disability-IEP (OHD-IEP).  What’s the difference? The FBA is the difference.  Let me explain further.

What is the function of mania? What is the function of hallucinations? What is the function of paranoia, delusions, and major depression? These are not behaviors.  These are the manifestations of an organic brain disorder, and one can’t perform an FBA on bipolar disorder or schizophrenia.  The teachers at the intermediate district knew and understood this.  The special education staff at my own district refused to grasp this.  The only way they would proceed with an evaluation for Grace was if I let them do an FBA on her.  When I suggested an OHD-IEP, they informed me that an OHD-IEP was only for children with ADHD.  That is wrong, and it’s also a misapplication of state and federal statutes.  The amendment to the statute regarding ADHD was added later so that children with ADHD could get services under an OHD-IEP not to the exclusion of all children without ADHD.

So, in the end, what kind of IEP will Grace have? Grace will have an OHD-IEP because Schizoaffective Disorder-bipolar type is not inherently an emotional and behavioral disability.  It’s a disability to be sure, but it’s another kind.  This is why Grace can’t go to therapy and make her issues get better.  She can learn coping skills and strategies, but her primary way to manage her illness is through medication compliance.  That kid has to take her pills! Every damn day.

This kind of understanding of your child’s illness as well as an understanding of your state’s statutes concerning educational disabilities and IDEA is what it takes to get your kid the proper IEP these days.  It’s also very important to remember that any state statute cannot override a federal ruling (unless you live in the 8th circuit it seems).  The so-called experts are not experts on your child, and they might not know that much about your child’s illness.  Schizophrenia spectrum disorders are very rare in children, and there wasn’t an educator at any school or district that I’ve met who knew a thing about it.  The school psychologist from the intermediate district didn’t even know that executive function disorders and schizophrenia are commonplace and well-known.  I sent her abstract after abstract via email to inform her so that she would be better educated about the working memory of children with early-onset schizophrenia.  This woman is the one writing her IEP after all.  I even asked Grace’s psychiatrist to speak about it at her IEP meeting so that everyone present would be better informed.  At this point, this isn’t just about Grace.  At some point, there will be another child who will have a schizophrenia spectrum disorder, and, hopefully, both districts will be better informed and better prepared to meet the educational needs of that child.

In case you live in a district that is as draconian and willfully oblique as mine, here is some very helpful information taken from the Federal Register (Fed. Reg.  at 46550):

The list of acute or chronic health conditions in the definition of other health impairment is not exhaustive, but rather provides examples of problems that children have that could make them eligible for special education and related services under the category of other health impairment. We decline to include dysphagia, FAS, bipolar disorders, and other organic neurological disorders in the definition of other health impairment because these conditions are commonly understood to be health impairments.

Because there are only a few health impairments specifically listed under IDEA, this comment on the Federal Register will be your friend if you have a child with a disability that is not emotional or behavioral in nature or is more authentically a physical health impairment but can be misinterpreted as behavioral such as Tourette Syndrome although Tourette Syndrome was just added to the list of Other Health Impairments in 2006.

Always remember: You are the expert on your child.

Helpful links: Federal Register complete with comments and Rules and Regulations.  This is some dry stuff, but it’s gold.

IEP, Here We Come!

By Jove, I think we’ve got it! An IEP, that is.  Yes sirree, we’ve got ourselves an IEP and a pending placement.  I feel as if I’ve achieved something miraculous and impossible like slaying a dragon, spotting a unicorn, stumbling upon a field of four-leaf clovers, and trapping a leprechaun and tricking him into revealing the location of his pot of gold–all at the same time!

I don’t know about you, but I’m exhausted.

The meeting went surprisingly well.  I wore my cashmere twin set in a feeble attempt to distract the ladies from the school district from my haggard appearance.  I just turned 40, and I’m not over it.  AND, here’s my secret shame.  I haven’t told a soul, but here goes.  A year ago, due to the great stress of Grace’s illness, I started losing my hair.  Like not just a little.  A LOT.  Handfuls of hair.  I have a lot of hair.  Long hair.  I started to think I had contracted some form of alopecia.  I had to change my haircut and my part in order to hide the hair loss.  I was horrified.  I am relieved to say that my hair is growing back, but it’s no longer blonde.  It’s growing in…WHITE! I have read that illness and trauma can cause this.  I don’t even know what to say about this except that I never imagined myself to be a 40 year-old woman with white hair.  I have begun to jokingly call myself The Silver Fox.  Clairol is my new best friend.  I’m not ready to look like my Aunt Esther who also had white hair…when she was only 35!

Where was I? Oh yes…me and my cashmere twin set, my silvery streaked hair (which will no longer be silvery in the least the day after tomorrow!) in a topknot, the ladies from the school district, and the very helpful people of the partial-hospitalization program (PHP) gathered around a conference table.  As luck would have it Dr. Klerpachick joined us, and he threw the opening pitch with a great explanation of Schizoaffective Disorder-bipolar type.  When he finished, he looked at me and said, “Did I do a good job? Should I say anything else?” I smiled at him and asked if he would speak about executive function and cognitive impairment in schizophrenic spectrum disorders.  He nodded and said, “Oh yes, well, as we all know cognitive impairment goes hand in hand with these kinds of disorders…”  He went on to discuss certain types of dementia, working memory, executive function, and the distractibility of a child like Grace.  She might look like she has ADHD, but she does not.  I wanted to hug him.  The ladies from the school district asked him what he would recommend for her.  His response: “A small classroom.”  Then, they asked, “Will she be able to return to a mainstream school?”  His response: “I can’t answer that.  Not my area.”  That is exactly what he should have said.  I was beaming.

Then, everyone got their turn to speak–Grace’s PHP teacher, the school psychologist, the facilities director, and, of course, me.  I gave my recommendation which is that Grace should be moved to an intermediate district which has a specialized program designed for students with Grace’s needs until she can be transitioned to Day Treatment.  The district would pay for this.  Much to my surprise, the ladies from the district said ‘yes’.  There are some necessary documents that need finishing touches.  I need to tour the facilities for the next educational destination and attend the next IEP team meeting to ensure that everything is as it should be.  After that? Grace will leave her PHP and her district and move on to the next stage of her education and treatment.

I feel as if I’m on the verge of completing an Iron Man competition.  Honestly, did it have to be this difficult to get a kid the appropriate services and placement? I guess the answer to that is ‘yes’.

I’m gearing up to deal with yet another IEP difficulty.  I have another child who has an autism spectrum disorder, and I suspect I’ll be making a transition with her in the very near future.  Well, if I’ve learned anything since this whole thing started it’s that I’m resilient.  I can go into a hospital with a psychotic child who just stabbed herself hiding partial hair loss, get her services, manage an autistic child when I come home, soothe an anxious child, handle a teenager, and somehow try to communicate with a grouchy husband.

Perhaps I really do have a little bit of Silver Fox in me after all…

The Silver Fox

The Silver Fox

Coming to The Table

A few weeks have gone by.  I can finally catch my breath and look around.  So, what’s the status quo?

  • Grace is finally stable.  No more paranoia, delusions, or hallucinations–for the most part.  
  • Her mood is the wild card at this point.  She still struggles with mania and depression, but the extremes have moved in.  
  • Sleep is an ever-present challenge because of the mood issues.  If Grace is manic, then she might not sleep.  If she’s depressed, then she might not sleep.  Sleep, however, is when the brain rests and renews.  It’s also one of the primary ways in which relapses are prevented.  This is a catch-22.
  • We’ve learned that Grace does better in contained environments like home, smaller spaces like the grocery store if it’s not too crowded, and a bookstore with which she’s familiar.  She cannot tolerate malls or overly crowded buildings like her school.  She can’t process the sensory input both audio and visual.
  • She will relapse.  It’s only a matter of time, but now we have more resources in place.

So, what now? Well, the partial hospitalization program (PHP) is getting ready to spring Grace, but they are, unlike some PHPs, adamant that she have an appropriate placement; and, her school district is clearly not going to provide her with an appropriate placement.  What’s going to happen? I have been collaborating with the people who provide education to the patients at the PHP, and they have agreed to perform an IEP evaluation for Grace–something her school district should have done but failed to do.  I just learned yesterday that Grace does indeed qualify for an IEP (of course she does!) according to IDEA’s criteria for educational disabilities.  On Monday next, I will meet with the IEP team which includes the facilities director of the school providing education to the PHP’s patients, Grace’s therapist, and Grace’s current PHP teacher.  The special education director of our school district will meet us at the PHP, and we will acquaint her with the ASR (assessment summary results) for the IEP.  I will then declare that I want Grace to be placed in an intermediate district that can provide her with the most appropriate education until she is in the 7th grade at which time she will qualify for day treatment.  Everyone on staff at the PHP agrees that Grace has profound needs, and a public school will not be able to meet Grace’s needs.  The facilities director has stepped in  with gusto and been a true advocate for Grace and me.  She has decided to deal with our school district herself which I appreciate to no end.

I don’t know how this meeting will go.  What I know for sure is that I will be dealing with duplicitous people who have no problem saying one thing and doing another.  They also have no problem breaking the law.  Perhaps when they were young and full of idealistic ambition they thought they were going to make a difference.  They went to college, learned how to educate special children with special needs, and, at some point between there and here, tiny compromises in ethics were made.  One white lie here.  One ethics breach there.  One little cover-up.  One federal violation…Sooner or later, one’s sense of right and wrong becomes murky, and it becomes more about covering one’s ass than it does about meeting the educational needs of vulnerable children.  I think this is what has happened in my school district.

Nonetheless, my job right now is to take care of Grace, and, unfortunately, I have another daughter who has an autism spectrum disorder whose needs are not being met either.  She does have an IEP, but it matters not.  She’s drowning, and there isn’t a soul in her school who really seems to care.  I have to make some decisions about her future, too.  Oh, the timing…